All posts for the month July, 2012

Going on holiday with a disabled child

Published July 27, 2012 by swanfreddie

When I began arranging my wedding to Freddies dad I knew we would never get the typical relaxing honeymoon most people go on to have after their wedding. I knew we wouldn’t be able to find anybody to care for Freddie while we were gone. We still don’t have respite in place properly and his needs are too complex to ask any friends/family to care for him for such a long period of time.
So I thought we could turn our honeymoon into a family holiday. Going abroad would be too hard with Freddie so we settled for a popular caravan resort in the lake district.

The packing was hard, Freddie really doesn’t travel light! His meds, syringes, feeding pump and other bits & bobs filled a whole suitcase alone before I even started on his clothes and his pushchair filled the entire boot space.
The car journey was standard. Freddie screamed the majority of the time, mickey mouse on the ipad eased it a bit but 2 hours of Freddie crying isn’t the best start to a holiday.
Unfortunately the holiday didn’t get much better. The problem with disabilities is that you don’t get a holiday from them. We can’t just turn off Freddies problems so we can relax & enjoy our holiday. It was very hard to enjoy yourself with such a demanding child needing you for every aspect of care.
The meds, tube feeding, nappies, feeding, dressing, cleaning side of the jobs kept us busy but they didn’t cause much stress, they are done very routinely & after 2 years we plough through them quite quickly now. The hard part was Freddie’s overall behaviour. The constant crying, whinging and trashing around, the behaviour that I don’t understand. Trying to satisfy a childs needs when they can’t speak is hard. I guess hes crying for food so I offer food, but food makes him more angry, maybe sleep then? So I put him to bed but he then becomes more hysterical in his cot. It’s a battle thats very hard to win.

Every car journey he cried, we tried to enjoy sightseeing in the lakes but it became impossible to use the car too much as Freddie just became too upset.
We had to ensure we were back at the caravan at lunch time so we could allow Freddie to have a few hours sleep so activities had to be limited & we did miss out on a lot of things we wanted to do. Evie loves boats & trains but we unfortunately couldn’t fit these in around Freddies naps.

He didn’t cry all the time tho and we did have some nice times. With the help of the ipad we managed to enjoy some tea in a few of the local cafes and we visited the aquaium. We also went out and found a childrens play area & there was a bouncy castle & trampoline. Evie was in her element while Freddie sat in his pushchair. I don’t think it gets any easier watching one child play alone when you know they should both be there together but we were on holiday so we tried not to dwell.
I watched on as Evie jumped around on the bouncy castle with the biggest smile on her face. Then a little boy climbed on & joined her. I knew he must of been about the same age as Freddie. I felt the familiar stab of pain in my heart as i watched this little boy jumping around with Evie knowing this is what Freddie should be doing. I looked around seeing other parents relaxing at tables with their drinks watching on as their children entertained themselves. The type of holiday many families go on…a relaxing one.

The stress with Freddie was heightened when he began being sick one night & I spend a good few hours cleaning him up & trying to comfort him. We did think we may have to cut the holiday short as the sick was quite bad but the next morning he seemed fine.

Most of out holiday was spend tirelessly seeing to Freddie. I have definatley come back off this holiday needing another holiday just to recover.
There are so many obstacles that made simple things hard. Feeding time was an issue as the highchair provided wasn’t supportive enough for Freddie & bedtime was awakward as Freddie is getting too big for a travel cot so he was a bit cramped up trying to sleep in one.

Having 2 children with such different needs is very hard to cater for at the best of times but on holiday it seems to become harder. There were activites like mini golf & archery or childrens play areas that Evie wanted to do but none of which was suitable for Freddie so the family holiday we planned became not so much of a family holiday but 1 parent with Evie & 1 sat with Freddie. A family split in half by the childrens different needs.

I can’t see us taking Freddie away on holiday again any time soon. A child like Freddie is hard enough to deal with on a normal day at home but when taken out of our environment and away from our equipment it’s made alot harder and not really worth the stress.


Freddie sat up…

Published July 16, 2012 by swanfreddie

…all by himself!!

Freddie has been able to sit up from about 14 months of age. Hes still very unsteady when sitting & does fall backwards alot. One of our new problems with him sitting is that his back is becoming more and more bent over. Hes growing very tall now & his muscles arn’t strong enough to hold him up straight & the possibly of short thigh muscles are making it hard work for him.
Freddie has always needed to be put in the sitting position as he wasn’t physically strong enough to pull himself from lying to sitting.

For the past year I have been working very hard with the physiotherapist to help Freddie be able to sit up without help. It’s very hard to teach a child such a thing when they have limited understanding of what you are trying to show them.

But after over a year of trying he has done it! Freddie has, yet again, made me a ridiculously proud mummy!

Hand Surgery

Published July 10, 2012 by swanfreddie

Freddie had his hand surgery yesterday. The operation was only suppose to be a quick 10 minute procedure where they would cut some skin on Freddies thumb then it would be put in a splint to try & stretch it out a bit. I did a post about it a few weeks back that you can read here which explains a bit more about Freddie’s thumb & the operation.

We met the consultant when we arrived at hospital  & he said the thumb was worse than what they were expecting(not sure how as he was the man who we last saw who put us forward for surgery) and said they are not sure if they can do what they originally planned to do but he would know more once he was in theatre.
So we went on the usual walk down to theatre, had cuddles & kisses & watched his eyes slowly close as the gas sent him to sleep. I said my goodbyes and left him in the hands of the surgeons.
Then I went off to the hospital cafe where I had a cup of tea & sat fretting  about what was going on.
30 minutes later we were told to wait in the parents room until we are called to go & collect Freddie. The waiting was very hard & alot of horrible things run through your mind. Luckily everything went to plan & 1.5 hours later we finally got called by the nurse to go to the recovery room to collect Freddie.
He was fast asleep all tucked up on his bed. It was explained to us that they hadn’t done what was planned & instead they had loosened the skin on his thumb by doing z shaped cuts all the way up it. In the future he will need the joint of the thumb looking at which will mean another operation.
Freddie is now in a cast from his fingers to his elbow with his thumb tucked in side to keep it out of harms way. This will stay on for 2 weeks then we are back in hospital to get that removed & replace with a splint.
I’m not exactly sure what to expect from the thumb. I’m not sure if it’s been released enough for him to be able to lift it off the palm of his hand yet or if this is what the 2nd operation will be for. We shall see in a few weeks when the cast comes off.
One thing I must say is how incredibly brave Freddie was. He did have a bit of a meltdown coming round from the anaethetic but he was being poked & prodded & having machines attached to him and his canula removed so i don’t think he can be blamed for being a bit grumpy.
Once home he was soon full of smiles & you wouldn’t of guess he had even had anything done.

He obviously has something

Published July 6, 2012 by swanfreddie

Today we had Freddies genetic appointment. For the past 2 years the gentics team have been trying to work out what mystery syndrome Freddie has.
We were at a different hospital today so we hadn’t seen this team before and I really wasn’t looking forward to dragging everything up from the past 2 years. How the pregnacy was, how the birth went, what he was like as a baby, it’s a lot of heartache to speak about.
Thankfully the man we saw was incredibly lovely. So kind & understanding. In the past when we have seen other genetic doctors they have been quite blunt & to the point. He had read up on Freddies notes and was very sensitive in the way he dealt with us. The appointment was still hard tho, every little problem with Freddie was noted.

In our ‘normal’ life Freddie to us is just Freddie. We overlook everything.  Sometimes at home, when we are on our own I almost feel that Freddie is ok…maybe he doesn’t even had a syndrome. That may sound silly but you get so used to everything that it just becomes so normal, we live in our own little bubble.
I don’t see the trigonecephaly or the sparse hair, things like dribbling, tongue protruding & teeth grinding is just what Freddie does, his bent, curved fingers & toes are just perfectly normal, every part of Freddie that makes up his dysmophic features are normal to me. His severe delays are just…normal, i can’t even remember what a 2 year old is supposed to do.

We discussed all of Freddies issues, the epilipsy, developmental delays, the skull problems, sleep issues. We spoke about what tests he’d had & what research study he was on. We spoke about having more children and the chances of this happening again. Freddie was stripped & had a thorough examination, every problem from top to toe was written down.

The genetist unfortunatly had no answers. He spent a long time just looking at Freddie, racking his brains for an answers “Well he obviously has something…..but what….It will just be so rare”

Leaving the appointment I felt like somebody had burst our bubble. Obviously for a two year old to dribble to Freddie extend, tongue protrude & grind his teeth isn’t ‘normal’ He obviously has something.

There’s no words to really describe how the appointment has left me feeling. Like any other parent I love my child. I want the best for my child.
I don’t want this for him. I hope that people see Freddie as I do, I don’t want them to see his problems, I want them to look beyond that and see the little boy he really is, my Freddie. My beautiful, perfect little boy.


Speech & Language – Home Visit 5/5

Published July 3, 2012 by swanfreddie

We had our last home visit on Monday. I thought it was 6 session course but it is infact a 5. No idea what led me tho think this as they did always say 5 sessions. Tiredness!

The speech therapist was due at 9.15am. I thought it would be a good idea to try & fit in a food shop delivery before she arrived. It wasn’t one of my best ideas. It turned up 15 minutes before she was due & Freddie had a total meltdown at the sound of the carrier bags. So 9.15 when the therapist did arrived she was greeted by a very upset Freddie, a kitchen floor covered in food & me in a abit of a flap! Not the best start to the session but it actually turned out to be my favourite out of them all.

This weeks was going to be messy play(I’m sure i’m not alone when i say I dislike messy play alot!)
We started with a plastic container & the therapist poured in some rice for Freddie to have a play with. Then she showed me different ways to keep Freddie’s attention & encourage communication through words & songs & different ways in which we could play with the rice –
We pretended when the rice was being poured into the container & was making a loud noise that it was raining, so we could sing the ‘it’s raining, it’s pouring’ song or any other songs about rain and some of the rice was poured on to Freddie’s hand to pretend it was raining on him.
We picked up the container and shook it to make different sounds, when we shook it hard we told Freddie that it was a loud noise(whilst emphasising the word LOUD in a big voice) & then we did it gently whilst telling Freddie it’s a quiet noise (whilst emphasising the word quiet in a small voice)

This activity can be repeated with different household foods – pasta, jelly, spaghetti, cereals, squirty cream, custard. Glitter can be added to make it sparkle & eye catching or add scents such as cinnamon or lemon juice. The food can be cooked to change the texture or the temperatures can be changed.

Next was gloop play –
We got a container & poured in some cornflour & allowed Freddie to touch the powder. We sprinkled some on his hand & pretended it was snowing. Next we added water to make the powder turn into gloop. We drizzled some over Freddie’s hands & allowed him to explore the texture. Nice & messy!

The next part of the session was focused on books.
Freddie has a lot of books but i’ve never known what to do with them…sounds silly but Freddie has no interest in them & would never sit still or pay any interest in a story.
2 books were shown to Freddie & we allowed him to touch which ever booked he would like to look at. They were basic baby books with bright pictures. The page was opened & Freddie was allowed to explore. If he touched a picture it was named to him, if he didn’t touch anything we pointed different ones out to him – duck, pig, cow, spider – with the spider the ‘incy wincy spinder’ song was sung.
It was all about trying to follow his lead to see what interested him & trying to keep it as fun as we could with words & songs.
The therapist told me that the way I read books to Freddie depends on how much language he understands. So reading all the words would be pointless as Freddie wouldn’t understand. So instead try naming the pictures to help him understand basic language, make the animal noises to help him associate them, don’t follow the structure of the book – if Freddie bats the page over read that page instead, sing songs about the pages if it holds his attention more, try and have books with textures in, make the books colourful & make actions to go with your words.
Just go with what ever words, songs or actions pop into your head.

I was very apprehensive about these home visits before they began. We had received very little help from the speech & language therapists before so I really wasn’t expecting much from them. But I have enjoyed them all so much & it has given me so many great ideas on how I can encourage communication with Freddie & learn to communicate without him speaking.
As a parent it can be terribly hard to deal with a child who doesn’t speak. In some ways it’s similar to having a newborn baby and they cry & you are trying to work out if they want. Is it milk or a nappy change? is it wind or are they tired? Are they teething or poorly or do they just want a cuddle? It becomes a bit like that but with a newborn they are nice and small & you don’t get whacked in the face by a big strong 2 year old whilst your trying to see if they do just want a cuddle but infact they don’t & what they actually want is feeding! It frustrating both for the parent and the child.
It’s VERY hard and support isn’t easy to come by. From talking to other parents it would seem we are lucky to be receiving these home visits and i’m hoping they will help us in some way in gaining some understanding of Freddie & hopefully anybody reading this may be able to take some ideas from the posts & use them to.

You can find the rest of the sessions here –